April 27, 2021: Once I was…But Now?

Six o’clock in the morning is never a good time to encounter one’s image in the mirror.  Certainly not for me.  My eyes still heavy from sleep, hair askew, and face washed clean of make-up the night before, I see a face that looks more and more like my father’s in his older years, and less and less like the image of myself I carry in my head, the one when I was somewhere around thirty-five, the barest hint of lines forming around my eyes, my hair thicker, longer and a shiny chestnut brown.  Some mornings, more frequent in these long, mind-numbing weeks of the continuing pandemic, I stare in disbelief at the reflection that looks back at me.  “What happened?” I mutter to my reflection.  “When did I become this older, grayer self? “

In the 1991 award winning Irish film, The Commitments, a mirror figures into the storyline as an ambitious Jimmy Rabbitte cobbles together a group of misfits into an almost-famous American style soul band.  The group briefly succeeds then falls short of stardom, due, in large part to their inter-band bickering. But Jimmy imagines fame, and in several charming sequences converses with himself in the mirror, pretending he is the interviewer and the interviewee,.  By the film’s end, the band has failed, and Jimmy is once again back at the mirror, reflecting on their demise and what he has learned from the experience.

We all have hopes and dreams, and some of them are tied to the fantasy that our bodies will never age or at least, not betray us.   We learn to deal with aging, that gentle nudge of reality as our joints stiffen or our hair thins or turns grey.  But when our dreams and desires are thwarted and we’re confronted with unexpected obstacles or events, we’re forced to reconsider and reflect, just as Jimmy Rabbitte, on what happened and why.

Cancer is only one of the life events that throws our lives into turmoil.  When that happens, we’re forced to re-evaluate and change, and that’s not a task for the faint-hearted, confronting the self we imagined ourselves to be and the thwarted dreams and hopes we once envisioned.  Even though they can be challenging, those necessary re-evaluations of our lives can be enlightening.

I recently read Between Two Kingdoms, the inspiring memoir by Suelika Jaouad (2021).  At 22, Jaouad was diagnosed with acute myeloid leukemia and given a 35% chance of survival.  Her hopes and dreams dashed, much of her life was spent in and out of hospital for the next five years until a successful bone marrow transplant put her cancer in remission.  While Jaouad had waged a heroic struggle during her illness and emerged cancer-free, she realized that though she’d survived cancer, she no longer knew how to live.  She embarked on a 100-day journey, accompanied only by her dog, travelling across the United States to visit people who had written her letters of support during her illness. Her journey also gave her the needed time to reflect on her five-year cancer ordeal and how it had altered her life and shattered the dreams she once had.  How would she re-define her life now that she was finally cancer-free?  In an NPR interview, Jaouad remarked, “The truth is that, for me, the hardest part of my cancer experience began once the cancer was gone…But being cured is not where the work of healing ends. It’s where it begins.”

It’s a different spin on healing, isn’t it?  Healing involves not only looking back, but the hard work of re-defining dreams and goals that are no longer relevant to who we have become.  Life teaches us, through unexpected disruptions, hardships, and disappointments that we can take nothing for granted.  And more, it means we have to take a tough look at ourselves in our own mirrors and come to terms with how our lives have changed—something Jimmy Rabitte and Suelika Jaouad also experienced.

It’s a process of slowing down, making the time to reflect and revise the way we want to live our lives.  It’s not unlike the hero’s journey we read in a good memoir: a vulnerable, searching narrator tries to make sense of his or her life in the wake of tragedy, upheaval or hardship.  Each is slowly transformed by their experience, and their lives changed.   This isn’t a struggle confined to memoir or fiction: our lives demand the same journey of us in the aftermath of any upheaval, tragedy, or life-threatening illness.  We too must hold up our metaphorical mirrors, remember who we were, but accept and honor who we have become; who we are now.   

LOVE AFTER LOVE
by Derek Walcott

The time will come
when, with elation,
you will greet yourself arriving
at your own door, in your own mirror,
and each will smile at the other’s welcome,
and say, sit here. Eat.
You will love again the stranger who was your self.
Give wine. Give bread. Give back your heart
to itself, to the stranger who has loved you

all your life, whom you ignored
for another, who knows you by heart.
Take down the love letters from the bookshelf,

the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.

(Collected Poems, 1948 – 1984)

Writing Exercise

Begin with a photograph of your younger self—before cancer.    Reflect: What was important to you then?  What hopes and dreams did you have?

Then, compare that younger self to the person you are now, after the experience of cancer, of life having left its mark, visible or not. Reflect on how your life has changed.   What dreams, hopes or goals do you have for yourself now?

(If you’re having trouble getting started, use a simple “brainstorming” exercise, making a list of “I used to be ________________ but now I’m________________.  Then choose one or two of the points and expand them in your writing.)

April 11, 2021: Put a little Ha-Ha in Your Life

 Cancer is no laughing matter.  And as we’ve discovered, neither is the continuing presence of COVID-19.

Yet if you happened to pass by a meeting room in a cancer center or overhear the Zoom sessions where I lead writing programs those living with cancer, laughter is something you’ll hear.  Even though we’re writing about the emotional impact accompanying a cancer diagnosis, laughter is always part of our sessions.  Counterintuitive perhaps, but there’s plenty of evidence to suggest that laughter is good medicine, just as Norman Cousins described in his 1979 book, Anatomy of an Illness.  Cousins wasn’t the first to advocate for the healing power of laughter.  Mark Twain had already done so, writing, “The human race has only one really effective weapon and that’s laughter,” he said.  “The moment it arises, all our hardnesses yield, all our irritations and resentments slip away, and a sunny spirit takes their place.” 

I grew up in an extended family who loved telling humorous stories and sharing laughter together.  Losses were mourned, yes, but soon afterward, the funny stories that were associated with the relative were told regularly at our family holiday gatherings.  And more than anything, I remember the fun of sitting among my aunts and uncles and sharing the memories and the laughter.  Life became brighter; there was no time for a bad mood, and somehow, the humor seemed to bind us more closely together. 

The power of laughter to help us heal is so great that some time ago, reading a 2015 issue of CURE Today Magazine, it didn’t entirely surprise me that, according to author Jeannette Moninger, many hospitals across America offer laughter programs for cancer patients, no doubt inspired by Norman Cousin’s experience and the research on laughter’s benefits. Moninger described a few: 

At North Kansas City Hospital, patients can watch funny movies…Duke Medicine offers a Laugh Mobile, a rolling cart from which adult patients in oncology wards can check out humorous books and silly items like whoopee cushions and rubber chickens.  And the Big Apple Circus Clown Care Program sends…clowns to 16 children’s hospitals nationwide to help put smiles on the faces of ill children… 

Even as far back as the 13th century, surgeons used humor to distract patients from the agony of painful medical procedures.  (Given the absence of anesthesia, laughter had to be good medicine!)  Those early surgeons were on to something, borne out since by many research studies since.   Laugh, and not only the world laughs with you: your body releases endorphins, the “feel good hormones that function as the body’s natural painkillers,” Moninger states, “the same hormones that create the “runner’s high.”  Endorphins also decrease the body’s levels of cortisol, the hormone associated with chronic stress.  In fact, cortisol has a number of negative effects on our bodies, compromising our immune system, tensing up our muscles, elevating blood pressure—all of which laughter helps to counteract. 

We all need a little laughter in our lives, no matter if we’re dealing with cancer or in this extended time of COVID—whether in person or, as many of us are now, on Zoom with friends and family.  Laughter helps to overcome loneliness and the mild depression that many of us are combatting in these extended lockdowns.  We need to laugh just as much as sometimes, we need to cry.  As cancer survivor Jim Higley wrote in a 2012 issue of the magazine, Coping with Cancer, laughter became invaluable during his treatment and recovery:

when you are raised with the gift of laughter, as I was, it can’t stay suppressed forever. It’s too powerful. Thank goodness for that. I eventually could see bits of “ha-ha” in my own life. Certainly not in the cancer, but in the mind-blowing circumstances that suddenly consumed my life. And laughing at parts of those experiences made me feel a little more alive.

The funniest part of it all was that the more I allowed myself to laugh, the more therapeutic my tears became.

(“Finding Humor in the Midst of Cancer,” Coping with Cancer, March/April 2012)

Try it. It’s good to find something—even a small thing—to smile or laugh about.  Yesterday, my husband and I recalled the humorous story of my first—and last—blind date.  My grandson, age 12, has decided he can cheer up his grandparents by sending us emails from Japan, filled with various memes and online games, ones I have tried and failed to win, which amuses him and, of course, me.  Just the fact he has written with so many “resources” for humor counteracts the greyness of our COVID lockdown life.  It’s an email full of smiles.

Writing Suggestion:

Find a little laughter in your life this week.  Dig back into your memories this week—the fun times, when you laughed so hard, tears ran down your cheeks.  Take a break from writing about and instead, try writing a little humor.  (Even a medical experience can have humor at times.  I was once diagnosed as having a “loose screw” after suffering swelling and pain in my forehead, where I do have a steel plate.  It wasn’t a loose screw, as it turned out, just a need for taking antibiotics before dental work.  But the diagnosis gave us a good laugh, helped relieve the worry and got me to another specialist for a second opinion—one who provided the solution to my forehead discomfort).

Perhaps you have a few memories of times that made you smile, even laugh aloud whenever you think about them.  Write one, that funny story, and let a little “ha, ha” brighten your day..  After all, as Charlie Chaplin said, “A day without laughter is a day wasted.”

Regaining Your Voice: Writing Cancer

In these long months of social isolation, I have taken more refuge in my morning writing practice than usual, spending the first hours of the early morning alone with my notebook, a thermos of coffee, and my small dog at my feet.  It’s a practice that not only allows me to plumb the depths of my own thoughts and emotions, but it also alleviates the bouts of anxiety I’ve felt during these long months of a pandemic.  Meanwhile, my husband has taken to immersing himself in poetry—a new endeavor for him–studiously making his way through my poetry collection, over 100 volumes accumulated over many years.   He is not only inspired but obviously finds solace his morning reading routine.  And it’s probably no surprise that in the past several months, I’ve been asked to facilitate many more virtual writing workshops with several cancer organizations.  COVID-19 has heightened the need for ways to interact socially and, for many, use journaling or a writing group to help express the anxieties, fears and loneliness of living with cancer – heightened in a time of this pandemic.  

Baking, creative cuisine, binging on British mysteries, and reading have been the other endeavors I’ve exploited during these long months of social isolation, and not surprisingly, a stack of novels sits on my nightstand.  I’ve found it difficult to read nonfiction:  memoirs of suffering and hardship especially.  But, quite by accident, I picked up what I thought was a novel and instead, discovered a powerful and compelling memoir of one young adult cancer survivor:  Between Two Kingdoms:  A Memoir of A Life Interrupted, by journalist and cancer survivor, Suleika Jaoud.  Jaoud was diagnosed with acute myeloid leukemia at the age of 22 and, for the next three and a half years, much of her life was spent in and out of hospital.  After years of treatments, her life was ultimately saved by a bone marrow transplant, and at age 26, she was declared “in remission.”  Whether you’re a young or older adult living with cancer, Jaoud’s story is, at times, terrifying, but searingly honest and poignant.  Before she was diagnosed with leukemia, her dream was of becoming a war correspondent.  Little did she know that the “war” she would be reporting on was her own life and death struggle with cancer. It was during the many months of treatments that she returned to something she had always “leaned on in difficult times:  keeping a journal.” 

“Illness had turned my gaze inward,” Jaoud wrote.  “As a patient you are constantly asked to investigate the body, to report on yourself, and to narrate your feelings…I understood now why so many writers and artists, while in the thick of illness, became memoirists.  It provided a sense of control, a way to reshare your circumstances on your own terms, in your own words.”

Her survival became her creative act, her journaling allowed her a new way to communicate and imagine herself beyond the confines of her hospital room.  Quoting British author, Jeannette Winterson, she wrote “literature offers—a language powerful enough to say how it is.  It isn’t a hiding place.  It is a finding place.”  Not only a place of discovery, but as we have learned from other patients, writers and psychologists, writing can help us heal. Writing through her illness as Jaoud did ultimately led her to the New York Times and an interactive column, “Life Interrupted, where she chronicled her experience as a young adult living with cancer.  

Writing and poetry were part of the healing process for former US poet laureate, Ted Kooser.  He was diagnosed and treated for oral cancer in 1998, and began writing again during his recovery.   For the entire time of his cancer treatment, he had not written at all, describing himself as “depressed by my illness, preoccupied by the routines of my treatment, and feeling miserably sorry for myself… During the period when I was in surgery and going through radiation, I really didn’t do any writing.

As his radiation treatments were ending, Kooser began a routine of early morning walks through the Nebraska countryside in an effort to regain his physical strength and stamina.  On one November morning, he surprised himself by “trying my hand at a poem.”  From that point on, his morning walks became the inspiration for a series of short poems—only a very few mentioning cancer, most inspired by what he noticed while he walked.   He began pasting the short poems on the backs of postcards and sent them to his friend, novelist and poet, Jim Harrison.    (NPR interview, PBS News Hour, Oct. 21, 2004).  The postcards ultimately became a book of poetry:  Winter Morning Walks:  One Hundred Postcards to Jim Harrison, published in 2001, one in which we see the author’s return to his craft and his love of life.

Just as Jaoud found sanctuary and structure in her journaling, Kooser found his poetry writing helped him regain a sense of control, saying, “It was very important for me to see something from each day that I could do something with and find some order in, because I was surrounded by medical chaos or health chaos of some kind.”

Some time ago, a member of one of my past cancer writing groups sent me a note.  Although in remission, she lives with the knowledge that her cancer is a relentless type, but she finds solace in writing.   She is more aware than ever before that “life is short,” and that she—as we all do—needs to be reminded not to waste it nor be consumed by things that do nothing to help us feel fulfilled and happy.  I thought about her this morning as I began writing, recalling the advice of writer, Annie Dillard, someone Jaoud also referred to in her book.  Dillard advice to writers was: “Write as if you were dying.  We are on terminal patients on this earth; the story is not “if” but “when” death appears in the plot line.” 

Dillard’s advice reminds me of the final line in Jim Harrison’s poem, “Larsen’s Holstein Bull,”  “death steals everything but our stories.” Writing is not only healing, but a way to have voice, to discover insight, meaning and creativity, to share stories of not only struggle, but life and healing that touch others’ lives, helping overcome the isolation and loneliness that often accompanies illness and suffering.  It’s why I write, and why I continue to lead writing workshops for those living with cancer. 

Writing Suggestions:

  • What has helped sustain you in these difficult times?
  • If you have used writing as a way of healing, how has it helped you?
  • Have you found others’ words meaningful, whether poetry or memoir?  Which ones and why?
  • For anyone wishing to write out of difficult times, Suleika Jaoud also offers an online site, The Isolation Journals, which features many different creativity prompts. https://www.theisolationjournals.com/

February 24, 2021: Still Waiting…

I admit it.  The months of waiting, of social isolation, the greyness of winter, and more waiting for the promised vaccines have upended any of my resolve to remain calm, positive, and creative.  I wrote about “the long wait” earlier this month for my “writing the heart” blog, and this morning, searching for inspiration, I perused several of my blog posts for the past year, particularly those concerning the initial fear as COVID-19 became a daily reality for all of us, and life began to be defined by social distancing and “shelter in place.”  The summer months brought a kind of reprieve, although my husband and I, both in the “higher risk” category, remained cautious in our movements and interactions. 

Now, approaching a year later, I feel increasingly like I’m living some version of the Bill Murray film “Groundhog Day,” awakening each morning to a kind of mental sludge, reminding myself of what day it is, and yet attempting to maintain some semblance of normal routines…making the bed, sweeping the floor, planning what to cook for dinner, and even yet, writing every morning in the quiet.  That’s where my real mental and emotional state are expressed.  I can barely fill a page in my notebook some mornings.  Any attempts at creativity are more often futile than not.  Occasionally I manage a silly, rhyming poem that, at the least, can make my husband laugh, but even those efforts have become less frequent.  So I was strangely pleased to discover an article in the British newspaper, THE GUARDIAN, this weekend with the title, “Writer’s blockdown:  after a year inside, novelists are struggling to write.”

Well, I’m no prize-winning novelist, but writing is a significant part of my life, so I read the article immediately, feeling some sense of “oh thank goodness, it’s not just me” as I did.  “Drab days, author William Sutcliffe remarked.  “Last night I had a dream about unloading the dishwasher.”  “I can’t connect with my imagination,” Linda Grant, a prize-winning novelist said  “My whole brain is tied up with processing, processing, processing what’s going on in the world.”  She described “waking up in a fog and not wanting to do anything but watch rubbish TV.”  Well, I will now admit I have all but exhausted every British crime drama on Brit Box over the many months of our COVID pandemic life.  It’s just an example of what another author calls “pandemic fatigue” that is affecting everyone.  “Life,” Grant said, “is just a sea of greyness, of timelessness,” sentiments I often share.  Even my reading list has become populated with “easy” reads, like detective novels, a genre I rarely indulged in before COVID, just pure escapism.  And the creative cooking I did for several months?  Gone.  My motivation for trying new recipes, those once weekly batches of scones or even the occasional cake has completely vanished.  Worse, my morning writing is top heavy with greyness and anxiety before I finally settle into “healthier” prose, sometimes the occasional inspiration for one of my workshops or a silly poem for a friend or family member. 

Of course, it doesn’t help my anxiety that my U.S. friends and family members have cheerfully announced they’ve gotten their vaccinations, unaware, perhaps, of Canada’s vaccination delays.  Where we were hopeful toward the end of 2020 that we’d also have ours by now, it’s less and less likely we’ll feel that needle jab in our arms before April. That only feeds my anxiety as the delay persists, and we read reports of more infectious variants. As a “higher risk” candidate, I find I am driven to compulsively read the national and provincial COVID-19 updates daily, despite the fact I know it rarely helps my mood.  We also worry for those who’ve lost their jobs, their shops and businesses as the pandemic lockdowns continue.  What will life be like when this is over? It’s hard to find much that’s uplifting in all of this, and my daily mantras and meditations aren’t helping much at the moment. 

 It’s cold comfort, perhaps, but I am hardly alone in this–far from it. So many people are suffering far more than we are.  So while I allow my worry to surface or write a rant sometimes to let off steam, I am fully aware how important it is I don’t end up in self-pity for more than the briefest of periods.  I’ve learned to close my notebook and turn to other pursuits when I realize I’m heading down the rabbit hole.

“This too shall pass,” my mother would say at any time we had an upset in our childhood…we grew tired of her pat phrase, but now, I can hear her voice in my mind, those same four words repeated again and again.  While I never found them very helpful in relieving whatever angst or youthful heartbreak I was feeling, I now find variations of that same theme in the words of poets I have long admired.  I guess there’s some truth in my mother’s mantra.

Wait for now.

Distrust everything if you have to.

But trust the hours.  Haven’t they

Carried you everywhere, up to now?

Personal events will become interesting again.

Hair will become interesting.

Pain will become interesting

Buds that open out of season will become

     interesting…

(From “Wait,” by Galway Kinnell, in Mortal Acts; Mortal Words, 1980)

Writing Suggestions

–Fed up with waiting?  Set the timer for 15 minutes.  Try writing a rant, just “dumping” all your worry and frustration on the page.  When time is up, stop.

–Re-read what you’ve written.  What stands out? Now, start with the one thing that seems most important and, setting the timer again for another 15 minutes, explore what’s beneath the frustration.

–How are you coping with the extended period of social isolation and lockdown?  What helps?  What doesn’t?  Write a humorous “prescription” for coping with this extended wait.

January 31, 2021: Life and Loss

I’ve been thinking about loss and losing things as I and my long-time friends grow older, although it seems to on my mind more often in this long year of living with the COVID-19 pandemic.  There are many months ahead before we might be able to declare an “end” to it, but a return to something called “normal” life is likely to take even longer.  What will we have lost?  What will we have learned?  What will “normal” be like?

I think of the losses—not just the deaths suffered—but all the other losses suffered by so many:  large and small businesses going bust; jobs lost by so many people; the loss of freedoms during these necessary lockdowns that we took for granted…and so much more.

In the coming week, I’m beginning another expressive writing workshop for Gilda’s Club here in Toronto, and as I think about the sessions and the men and women who will attend, I think of the losses of cancer brings with it and how COVID-19 may add to the stress of living with a cancer diagnosis and the fear of loss.

What do you lose when you’re diagnosed and treated for cancer?  There are physical loses and emotional ones.  Some permanent; some temporary.  I thought back to one of my earlier writing groups a few years ago. A dozen people, all living with cancer, seated around the table with their notebooks open as I offered a short “warm-up” writing prompt at the beginning of the session..    

“What’s on your mind this morning?  What thoughts or concerns have accompanied you to our group?”  Within seconds, only the rustle of paper and pens could be heard, as everyone bowed their heads and wrote.   A few minutes later, I sounded the chime and asked, “Who wants to read what you’ve written?”  One woman, her head covered by a brightly colored scarf, quickly raised her hand. 

 “I’m angry about losing my hair,” she began.  “It was always long and full, and it’s was my signature.”  She looked up from her notebook, eyes red and teary.  Several of women nodded sympathetically.  I recalled my own embarrassment when, as a teenager, I sported a bald head twice after two neurosurgeries.  I had no choice but to cover my bare head and the ear-to-ear scar with brightly colored scarves as I returned to school after surgery.   I remember how vulnerable I felt without my hair, how embarrassed, and how I prayed no one would make fun of me.  

It grew back, of course, just as the young women’s hair did, becoming full and long again over time.  She was one of the lucky ones, just as I was; her hair loss was temporary.  She recovered and regained a full head of hair and an active life—in contrast to other group members, who’d lost far more than their hair. 

When I invite the participants to write about loss, temporary hair or diminished energy during treatment aren’t at the top of the list.  Bodies are altered by surgeries and scars.  Dreams are lost. Friends are lost.  Loved ones are lost—whether by death or by the dynamics of families unable to come together in crisis.  Although many may return to a so-called “normal” life, their lives are rarely the same as they were before cancer.  

Being human demands that we come to terms with different losses at different times in our lives, small or large. We all experience them.   Life requires our continual adjustment to the changing seasons of being alive and learning to let go of old ways of being that no longer serve us or are possible. It’s not easy, this business of loss and losing.  Yet, it is the thing we all are challenged to master—and learn from.

Then we couldn’t help expressing grief

So many things descended without warning:

labor wasted, loves lost, houses gone,

marriages broken, friends estranged,

ambitions worn away by immediate needs.

Words lined up in our throats

for a good whining.

Grief seemed like an endless river—

the only immortal flow of life.

After losing a land and then giving up a tongue,

we stopped talking of grief

Smiles began to brighten our faces.

We laugh a lot, at our own mess.

Things become beautiful,

even hailstones in the strawberry fields.

(From: “Ways of Talking, “by Ha Jin, in Facing Shadows,  1996)

Writing Suggestion:

Write about loss this week, about losing something—small or large—whether from cancer, life changes, unexpected tragedies or challenges.    Write what you felt.  Describe how you came to accept and move forward from the losses you suffered. 

January 16, 2021: The Moment of Diagnosis: Different Points of View

He opens the door

               and walks in,

his face and white coat

stiff with starch,

holds my hand, and

he says,

“I’m afraid.

I am afraid

you have cancer…”

From: “Diagnosis,” by Majid Mohiuddin, in The Cancer Poetry Project)

“Write about the moment when the doctor said, “Cancer.”  It’s usually the very first prompt I offer in a new series of my “writing through cancer” workshops.  That moment of confirmation, the seconds in which a physician delivers the words that, in that one instant, will change your life forever, is something everyone in the group shares, an event that evokes strong emotions as it gets written about and described. 

Writing that is most healing has some particular characteristics, as psychologist James Pennebaker and his colleagues have noted, among them, writing that is concrete, vivid, and gives detailed descriptions of trauma, distress and emotion.  When I ask group members to return to that first moment they hear the word, “cancer.” No one ever responds to this prompt with generalities.  And when they read what they’ve written aloud, it’s often emotional, as they remember their doctor’s words, “I’m sorry; you have cancer.” 

Shifting your perspective, from the immediate and first person (“I”) perspective, can sometimes reveal other aspects of your experience.  At the least, it’s interesting to try writing about that same moment of hearing your diagnosis, but instead of “I”, try using third person, “he or she” to refer to yourself.  It forces your perspective to shift a bit, as it you are looking at yourself in that moment and doing so can reveal other insights into what you experienced or how you reacted in that moment.

But consider the other’s point of view:  while those words, “you have cancer,” are unfamiliar and terrifying to us, to the doctor, they are words delivered many times, to many different people.  How difficult must it be to be the physician who delivers those words to a patient?  Not once, but so many times throughout one’s medical career? 

The door seems impenetrable.

Today is arduous.

I have seen patients with cancers of pancreas,

Gastric, cervix, colon—all unresectable…

Why is it so difficult to enter this room?

(From: “The Door,” by David H. Huffman, MD, in The Cancer Poetry Project, v. 1, 2001)

 “The Before,” written by Jennifer Frank, MD and published in the Journal of the American Medical Association, offers the reader a rare—and poignant–glimpse into the doctor’s mind as she prepares to call a patient with a cancer diagnosis, the words no one wants to hear.

This is the before.  A moment suspended like a bubble floating on a warm summer breeze gently but inevitably toward the ground.  I feel the pop coming, an implosion of the very center of your life.  Anticipating what this moment would hold, I nevertheless hoped for something different.  To be able to eagerly dial your number and shout out the good news to you in a breathless rush.  “It’s not what we thought.  It’s not cancer.”

Instead I take a deep breath, pressing each number slowly, cautiously, drawing out the moment before the burst.  The burst of your plans and your dreams and your future.  I stall for time, asking if this is a good time, are you alone, do you have a pen and paper? …

I want to be straightforward but not blunt.  I want to be compassionate but remain professional.  I slow myself down, remind myself that the words I’m about to say are ones that I’ve said before, many times, but that the words I’m about to say are also ones you’ve never heard before… (In: “A Piece of My Mind,” JAMA, March 7, 2012, v.307. no.9).

It’s difficult, when we are the patients, the ones receiving the diagnosis, to understand what is felt by the person delivering the bad news.  We may never completely understand what is behind the doctor’s mask, yet we need the practiced and steadfast hand of a professional to guide us through the upheaval, and help us find our way through a regimen of treatments.  “All I can offer is my hand,” Frank concludes, “…to hold you up, prevent you from going under until the sea calms and the path clears.” 

Several years ago, when I was leading writing workshops for the “Writers’ Workshop at Stanford Medical School,” I invited a group of medical students and physicians to “write about the moments just before you had to deliver bad news to a patient or someone close to you.”  What they wrote and read aloud were achingly honest and no less powerful than those written by the people living with cancer.   Their stories and poems offered a glimpse behind the medical mask, a reminder of what it is to be human, to care and to feel, whether patient or physician.  As Huffman expresses in his poem,

…I can only be forthright and compassionate.

Why is it so difficult to enter this room?

Maybe someday I will be in that bed.

I hope that if that time comes

My doctor will be as truthful and considerate.

But if she hesitates at the door…

I will understand.

Writing Suggestions–Changing Point of View:

This week, write about that moment, the one just before you hear the words “you have cancer.”  Remember, if you can, write in as much detail as you can:  what you were feeling, where you were sitting or standing, what you remember about your doctor’s voice, eyes, face.  Write in the first person, “I.”

Then, as options to try a different point of view, write about that same moment again, but instead of “I,” write in the third person, as if you’re watching yourself from a distance, using “he or she” or she to write about that same moment.  

Now, as an even more intriguing perspective, try putting yourself in your doctor’s shoes and write from her or his perspective.  Imagine you are the one who must deliver the bad news, this diagnosis, to you.  What the doctor might have seen as she or he looked at you or heard when you came to the telephone?  What might she or he have felt?  Write in as much detail as you can. 

When you finish writing in either the third person to refer to yourself OR writing from the imagined doctor’s perspective, compare the versions.  Did anything change in the way you think about that moment? Did you discover any new insights or understanding?  What was it like to write from the doctor’s point of view? 

December 21, 2020: Not Giving Up on Santa Claus

I’ve been trying to summon up something that resembles the “Christmas spirit,” muted by this time of social isolation and continuing lockdowns.  For years, our holidays were filled with family traditions, memories, and the excitement of Santa’s arrival during the night of December 24th— all re-experienced years in the wide-eyed excitement of our grandchildren.  Now they are old enough to know that Santa Claus isn’t “real,” but their joy and excitement are as fresh as ever, and sharing the holidays with them, re-kindles our own memories of our childhood Christmases.

Yet this year, with COVID cases rising again at a disturbing rate, we will, like so many others, be spending our Christmas alone. Isolated from my daughters by distance or the pandemic, the usual magic of Christmas tree trimming, colored lights everywhere, holiday carols, and the remembrance of Santa Claus seem like distant memories.   At times we struggle to quell our anxiety and cling to hope—as so many others in a time time that has unended our sense of well-being, community, and hope.  The vaccine can’t come soon enough—but even as it begins to arrive, then what will “normal” life look like?  What losses are yet to be fully realized?  There are challenges yet we will all face.

I’ve been thinking a lot about Christmases past—those that were joyful; others that were accompanied by losses and difficulties.  I’ve remembered childhood, when Christmas was a magical time, and I, like all the children my age, believed in Santa Claus.  Those memories also reminded me of the time I discovered Santa really didn’t exist…

Third grade. I was eight years old, and it was early December, shortly before our Christmas break. I arrived at school morning and was hanging up my winter coat in the cloakroom when my two best friends came in and pulled me aside.  “Guess what,” they whispered, “There is no Santa Claus!” I stood stock still, trying to take in what they were telling me.   Santa, they said, was made up.  He was something for little children, not for 8 year old girls like us.  “It’s your mom and dad,” they whispered conspiratorially. They buy all the presents and put them under the tree.  Santa Claus isn’t real. He’s just for little kids!”  They smiled smugly, watching to see my reaction.

 “I know,” I said quietly. I didn’t want to appear stupid, but I was embarrassed, because the truth of the matter was this: I still believed in Santa Claus, even in third grade.  Besides, I had a younger sister and brother, so Santa Claus was very much alive in our home.  I returned home after school that day with the weight of an awful secret on my shoulders. Should I should tell my parents I knew there really was no Santa after all?  In the end, I said nothing and a day or two later, my sister and I came down with the chicken pox, just days before the Christmas break.  There would be no visit to sit on Santa’s lap that year.

Shortly after dinner, Christmas eve, a loud knock sounded at the front door and we heard a deep voice saying, “ho, ho, ho.”

“I wonder who that might be,” my father said, winking at my mother as he went to open the door.  Santa Claus, somewhat slenderer than I had imagined, stepped into the front room.   “Ho, ho, ho,” he said again, then took his big bag of presents from his shoulder and sat in the chair my father offered, telling us to come close to Santa. I could only stare, the secret told to me by my friends burning in my brain. Was this really Santa or just someone pretending?

There’s an old black and white photograph from that long ago Christmas eve:  my little brother sits on Santa’s knee, my wide-eyed sister next to him, while I am seated farthest from him, doubt clearly etched on my face.   I still remember how much I wanted to believe it was really Santa Claus sitting with us, but I couldn’t. I was now old enough to know better.

Early the next morning, , I tiptoed to the living room before the rest of the family awakened, eager to see the presents which had appeared under the tree during the night.  Our colored tree lights had been left on and the were drapes open to make them visible to passers-by.  I knelt at the big picture window and looked out:  snow had fallen during the night, frosting streets and sidewalks a sparkly white.  That’s when I saw him—Santa Claus. He was opening the gate to a neighbor’s house just three doors down from ours and walking inside.   For an almost magical moment, the possibility of Santa Claus’s existence lingered that Christmas morning, snow glistening in the morning sunlight, as I watched a bearded man in a red Santa suit disappearing inside, an empty burlap bag slung over his shoulder.

I stopped believing in Santa for good after that year, but the memory of that last glimpse of him, remained for a time–the faint hope he might exist. It was about what it meant to grow older and be conflicted: not wanting cling to childish beliefs, and yet, reluctant to let go of the magic of Santa Claus for just a bit longer.  There would be similar life lessons repeated many times in my life—broken dreams, discovered truths that were hard but necessary to accept, losses of people and beliefs I thought never could happen.  But that’s life, isn’t it?  We all come to terms with the difficult parts as well as the good, and somehow, we still find hope, good, and love in the midst of life’s most challenging moments–maybe even magic or miracles… just like that earnest eight year-old gazing out the window on a Christmas morning, the first snow glistening, while a man in a Santa suit disappeared into a house and rekindled a hope that maybe, just maybe, Santa existed.

It is probably why I still love the famous letter written by Francis Church, then a writer for the New York Sun, responding to eight year-old Virginia O’Hanlon’s letter asking, “Please tell me the truth.  Is there a Santa Claus?” Church was given the task of responding to her.  He wrote:

     Yes, Virginia, there is a Santa Claus. He exists as certainly as love and generosity and devotion exist, and you know that they abound and give to your life its highest beauty and joy. Alas! how dreary would be the world if there were no Santa Claus! It would be as dreary as if there were no Virginias. There would be no childlike faith then, no poetry, no romance to make tolerable this existence.

     We should have no enjoyment, except in sense and sight. The external light with which childhood fills the world would be extinguished.  (From: “Is There a Santa Claus?”The New York Sun,September 21, 1897)

I don’t know about you, but I’m not going to give up on the spirt of Santa Claus, of the generosity, kindness, courage and gratitude I have for the gifts of life I have experienced during my lifetime. It’s those memories and qualities that keep me going and give me courage and hope.

To all those reading this blog, I wish you a holiday season that includes the warmth of friends and family, however far apart we must be this year, and for year ahead, hope and healing.

Happy Holidays.

Writing Suggestions

The December holidays are full of memories. Whatever your traditions, write about some of the most “alive” memories you have of this time of year–what stands out for you?

Did you believe in Santa Clause when you were a child? When did you stop? Was it any specific event that changed your belief? Write about it.

What, in this year’s holiday season, will be different for you? How are you making it–or not–a time of celebration, even without the usual activities,family or friends as part of it?

What’s most important for you to remember this holiday season? Why?

October 28, 2020: When Death Comes…

When death comes
like the hungry bear in autumn;
when death comes and takes all the bright coins from his purse

to buy me, and snaps the purse shut…
when death comes
like an iceberg between the shoulder blades,

I want to step through the door full of curiosity, wondering:
what is it going to be like, that cottage of darkness?

(excerpt, “When Death Comes,” by Mary Oliver, in New & Selected Poems, 2004)

This morning, the newspaper headlines announced Canada’s COVID-19 death numbers had surpassed 10,000, clear evidence of the continuing second wave of this pandemic in our lives.  I try not to spend too much time reading about the COVID-19 statistics now; to do so only increases my anxiety and more, is a stark reminder that we are far from an end to this current state of social distancing, lockdowns, and face masks as a necessary part of our daily attire.  My husband and I are both high risk—he, a cancer survivor, me, living with heart failure, and both of us older. In these times, that fear of mortality can easily creep into my thoughts, usually late at night, a shadowy presence that is the evitability of life. 

This past weekend, I gave a Zoom session on journaling at the National Symposium for Ovarian Cancer Canada. After introducing a short writing exercise on fear, one attendee offered to read what she’d written:  an emotional admission that the fear of death that is constantly in her thoughts—echoing what many of those attending the session were feeling—and in a time of a pandemic, the prospect of death, of grief, seems to be much nearer. 

We haven’t lost any of our friends or family to COVID-19, but we have lost some people dear to us from cancer recently, which forces the topic of mortality and grieving out in the open.   My husband and I have talked about the grief of a friend’s partner in the past weeks, even though his death was expected as any further treatment options for his cancer had been exhausted.   His death and his wife’s loss reminded me of the death of my husband’s brother-in-law a few years ago, and his sister’s grief.  His death was not unexpected either; he’d endured an agonizing four year battle with bladder cancer, but his wife’s grief had been held in abeyance as treatment after treatment failed, the medical expenses increased, and he clung to life and hoped for a miracle. 

But the dam broke after he died.  I telephoned my sister-in-law the morning my husband boarded the airplane to fly to Seattle for Ed’s funeral.  It rang several times before Joan answered.  She had been crying and quickly apologized.  “I’m sorry,” she said, “I just went into his room and saw how empty it is, and…He’s gone, Sharon,” she said, her voice heavy with sorrow and exhaustion.  “He’s been my life for sixty-four years.” 

It is hard to give up after months of making lists,

phoning doctors, fighting entropy.  But when the end comes,

a bending takes over, empties the blood of opposition

and with a gentle skill, injects a blessed numbness…

(From “Numb,” by Florence Weinberger, in The Cancer Poetry Project, 2001)

There’s a great deal written about dealing with the loss of a loved one from cancer, and while some may think of grief as a single instance or short time of pain or sadness in response to the loss—like the tears shed at a loved one’s funeral—as the American Cancer Society reminds us, the real process of grieving lasts much longer and involves the entire emotional process of coping with the loss.

This morning, I plan on touching base with the friend whose husband died a few weeks ago from prostate cancer.    I check in with her every couple of weeks, remembering too well that emptiness after a spouse’s death, after the calls, sympathy cards, and flowers, and the the reality of living without one’s loved one—the unexpected emptiness in the home, the silences, and diminishment of calls from acquaintances.  The loneliness.   In our last conversation, she described what she’d been doing to keep busy.  She and her husband, like my husband’s sister, had been together for sixty plus years.  “I haven’t cried yet,” she remarked.

 It’s hardly a surprise.  According to the American Cancer Society, studies have identified emotional states that people may go through while grieving. The first feelings usually include shock or numbness. Then, as the person sees how his or her life is affected by the loss, emotions start to surface. The early sense of disbelief is often replaced by emotional upheaval, which can involve anger, loneliness, uncertainty, or denial. These feelings can come and go over a long period of time. The final phase of grief is the one in which people find ways to come to terms with and accept the loss.

Perhaps this surrender foreshadows my own old age

when I have raged to exhaustion and finally have to go.  For now,

the numbness wears off.  I drive to the market, cook my own food,

take scant note of desire

with no one to consider or contradict my choices.

Something in me will never recover.  Something in me will go on.

Life, death—these are the shared human experiences.  I know that, for me, the death of a family member or a close friend stays with me longer now—partly because death seems to be more with us in the time of a pandemic and partly too, because autumn, that final burst of color before winter sets in, is a time of looking back, remembering, being more aware of life—and of death too.   

Writing Suggestion:

This week, consider grief and mourning.  What memories come up?  Have you lost loved ones to cancer, unexpected death or other serious illnesses? Write about the loss of a spouse, family member or friend. Try to articulate the feelings of grief you experienced. What was it like? What helped you work through your grief?

October 13, 2020: Remembering Gratitude

If the only prayer we say in our lifetime is ‘thank you,’ that would suffice.” –German philosopher Meister Eckhart

We celebrated our Canadian Thanksgiving holiday yesterday, a month and a half earlier than the American celebration.  In a time dominated by another wave of COVID outbreaks, advice to stay home and minimize social contacts, it might have been easy to forget what the holiday symbolizes:  gratitude for the bounties of the harvest and blessings shared in the past year.

Thanksgiving may symbolize thankfulness, but it was difficult to summon a sense of gratitude when I first awakened.   Daily, my mood threatens to take a nose dive with living in a continuing pandemic, hearing or reading the constant reports of the turbulence and struggle in the world, and its unending hostility and violence.   Frustration, fear or worry are emotions that seep too readily under my skin as this strange life in COVID-19 continues.  It often requires conscious effort to re-direct my thoughts to those things in life that offer solace, joy and gratitude; my spirits are all to easily dampened by the daily deluge of world news and updates of COVID-19 case numbers, and no amount of humorous posts on social media will lift them.

Yesterday, like many other Toronto families, we would be celebrating without our family gathering together for a traditional Thanksgiving meal of turkey and all the trimmings.  I admit that all of us were feeling a bit bummed by that; it was not about the food, but about the continuing isolation from our daughter and her family.   Late in the morning, my telephone rang.  My daughter was calling.  “Let’s go for a walk,” she said, and an hour later my husband and I met her and her daughter near one of Toronto’s many urban trails.  We spent the afternoon walking in the crispness of an autumn afternoon, among trees decked out in their seasonal finery, all scarlet and gold.  Who could not fail to have their spirits uplifted by simply having time together in the open air of a fall afternoon? We returned home, spirits refreshed, grateful we had the afternoon together, and remembering that despite everything, our lives are good, blessed by living near our eldest daughter after so many years of living far apart, even if we wouldn’t be sitting around the dinner table together this year.

I saw the season’s first bluebird
this morning, one month ahead
of its scheduled arrival.  Lucky I am
to go off to my cancer appointment
having been given a bluebird, and,
for a lifetime, have been given
this world.

(Ted Kooser, Winter Morning Walks, 2001)

After we returned home, I turned back to preparing the material for this week’s “Writing Through Cancer” virtual workshop for Gilda’s Club.  I decided on a different exercise than I had originally planned, inspired by the poem, “Still, I Give Thanks,” by the poet Marie Reynolds, something I discovered four years ago on Garrison Keillor’s The Writer’s Almanac.  Reynold’s title seemed so fitting for these times—and coupled with the experience of living with and being treated for cancer, it serves as a reminder that there is much to be grateful for.  Here’s an excerpt:

Day fourteen in the radiation waiting room
and the elderly man sitting next to me
says he gives thanks every day because
he can still roll over and climb out of bed… Lately, I too, give thanks for the things I can do—
sit, stand, take my next breath. Thanks for my feet,
my fingers, the ears on my head…Each day, supine
on the table, I listen to the razoring whine
of the radiation beam. It hurts to lie still,
the table sharp as an ice floe beneath the bones
of my spine. Still, I give thanks for the hands
that position me, their measurements and marking
pens, the grid of green light that slides like silk
across my skin…
(From:  The Writer’s Almanac, June 21, 2016)

“Still I give thanks…”  What a simple phrase and yet, a powerful reminder to ourselves to find gratitude for what we do have instead of being caught up in what is missing or difficult in our lives. Where do you find gratitude? 

Writing Suggestion: 

Reynolds’ poem is lovely reminder that even in cancer, there in much in your life to be grateful for.  Begin with the phrase, “Still I give thanks,” and, usually her poem as a model, see where it takes you.  Chances are you’ll discover, like I do when I stop to remember and remind myself, of remembering and practicing gratitude for the small every-day gifts we have in our lives.

August 31, 2020: Writing in the Time of Covid-19

A friend sent me the title of a new book this past week:  Write It Down: Coronavirus Writing Prompts.” Written by Mary Ladd, a San Francisco writer, it’s a compilation of activities meant to help writers, amateur and professional, during the weeks of social isolation that has been the product of the Corona Virus pandemic.  Ladd is no stranger to understanding the benefits of writing during tough times.  Diagnosed in 2013, with breast cancer, she wrote about her experience on a blog, and since, has contributed to two other books of writing prompts and starts for those who need a little inspiration to write.

Ever on the lookout for new ideas and inspiration for my writing groups, I did a quick search on writing during the Covid pandemic, finding dozens of  prompts, and articles on COVID-19 writing in newspapers, magazines and on radio shows.  Not surprisingly, they all echo a common theme:  writing helps us navigate difficult times, something articulated for many years by writers and researchers alike, particularly since the ground-breaking research of James Pennebaker, PhD, first gaining recognition in the late 1980’s and early 1990’s, has been replicated dozens of times across many difficult populations and in many different situations.  The bottom line?  Writing about difficult situations and emotions can not only relieve stress and anxiety, but also has many health benefits.  Pennebaker’s research, coupled with my love of writing and personal experience of an early stage cancer diagnosis in 2000, was the impetus for me to initiate my very first writing group nearly 20 years ago.  I’ve never looked back.  Since then, expressive writing groups and therapeutic journaling methods have multiplied dramatically.  It’s no surprise then to see another “explosion” in the popularity of journaling or diary-keeping in this time of a world pandemic.

Yet, keeping a diary or journal can have much more impact  than being  therapeutic.  As Amelia Nierenberg reminds us in  a recent article appearing in the New York Times, we’re reminded that “the history of our present moment is taking shape in journal entries and drawings.” (“The Quarantine Diaries,” New York Times, March 30, 2020.)

As the coronavirus continues to spread and confine people largely to their homes, many are filling pages with their experiences of living through a pandemic.  Their diaries are told in words and pictures:  pantry inventories, window views, questions about the future, concerns about the present. Taken together, the pages tell the story of an anxious, claustrophobic world on pause.

“The time we’re living through will one day become history,” Morgan Ome writes in a recent issue of The Atlantic.  And it’s compelled many people to begin writing to capture their quarantine experiences for posterity.  One researcher at Cornell University in New York gave her students a journaling assignment as stay-at-home orders became widespread and Cornell University closed.  “This is a pivotal moment in history, Janis Whitlock said. “We’re in it right now.  We have an opportunity to chronicle it.”  She expanded her virtual classroom assignment into a global project, “Telling Our Stories in the Age of COVID-10,” which she launched in March, and together with her team, have  received responses to email journal prompts from over 500 people around the globe.  Whitlock is planning to compile these into a “snapshot” of pandemic life from around the world.  But she’s not the only one gathering physical and digital journal entries written during the pandemic. Universities, historical societies, and local publications are also capturing these personal accounts, acknowledging them as a rich source for historical records and offering insight into the minds and experiences of ordinary people like you and me (The Atlantic, August 6, 2020)

CBC Radio, in a recent broadcast of “The Current,” also reported on the growing efforts of historians around the world who are requesting diary entries, photos, videos and more from those cooped up during the pandemic.   Catherine O’Donnell, a co-founder of A Journal of the Plague Year:  A COVID-19 Archive, underlines the importance of gathering experiences of the pandemic, no matter how unimportant or mundane they might seem.  In a time defined by isolation and fear, she says, these memories help people feel connected—and the offer a reprieve from the stress and anxiety that comes with living in a period of uncertainty (‘We want it all’:  Keeping a COVID-19 diary? April 23, 2020 broadcast).

Our stories matter.  Not only is writing beneficial for us but so is finding a way to capture and preserve our experiences and memories, whether of cancer or other serious illness, of love, life, sorrows, people, places… Writers have always known this.  I remember Joan Didion’s words about why she writes:  “To remember what it was to be me…” And to remember the times, and experiences that defined our lives.   “Death steals everything but our stories,” Jim Harrison wrote in his poem, Larson’s Holstein Bull.  Our knowledge of history is grounded in the stories and experiences of those who lived before us—and that includes our personal history.  Again and again, I find I wish that I had documented the oral stories of my father,  his childhood and my homesteading grandparents—only fragments remain—or that I’d asked more questions of my more secretive mother, whose childhood remains, in large part, unknown, and yet, with the hint of shadows.  No one else can tell our stories, as Dorothy Allison famously wrote in her memoir, Two or Thing Things I Know for Sure:  “I am the only one who can tell my story and say what it means.”

Writing, whether about the experience of cancer or COVID, can help us not only document, but help improve our emotional well-being, even aspects of our physical health.  The task is to write honestly, translating your feelings into words and writing as descriptively as you can, making connections between what you feel and what you’ve experienced.  You can add to your writing with art, photographs, sketches, cartoons—all ways to express and understand your experience.  I don’t keep every journal or notebook that I use for my daily writing practice, but I do re-read them and, often, I clip out sections that seem more important or meaningful to me than other pages.  In this protracted period of “sheltered-in-place,” my notebooks contain boredom, anxiety, worry, irritability and not infrequently, humor. Sometimes I work on a story idea; sometimes I write poetry.  Sometimes I fill the pages with old memories.  Sometimes I complain.   It hardly matters. What matters is simply that I write—COVID or not.  Maybe that’s why you write too.

 

Writing Suggestions:

  • Write about living with cancer—and being treated in the midst of the COVID lockdowns. Did the pandemic increase your anxiety or fear?
  • Has writing helped you deal with the uncertainty of living in a time of a world pandemic? How?
  • Prompts for writing about life during COVID?  A sample of Suggestions for writing from: familysearch.org/blog
    • Did you learn anything about yourself from this experience?
    • What is one aspect of your life that was harder during the pandemic?
    • What is one aspect of your life that was easier during the pandemic?
    • How has this experience changed you or those around you?
    • In what ways, if at all, do you think the world will be changed because of COVID-19?
    • And here’s a link to the New York Times with twelve ideas for writing—and more—during COVID.l You might find a little inspiration from one of them.